#SevereME is… missing solitude, privacy, unstructured time and autonomy, but most of all, autonomy.
My contribution to #SevereMEday – Quotes from patients.
I’m starting to write this at 4 o’clock in the morning. I have sleep reversal, and today, August 8th, is Severe M.E Understanding and Remembrance Day, 2017.
This first photograph is not my story, but it’s a good enough start.
2 nights ago, seeking support, I posted in a Facebook group, under the heading: “Injured”, that I had damaged my ribs, asking if anyone would be awake late, very late.
People were lovely and kind, some offering a number of solutions.
What the responses made me realise, however, is that I hadn’t done a very good job of explaining the severity of my condition generally. In fact, in crisis due to the injury, I hadn’t been able to explain anything at all.
When I joined the group, I never introduced myself and didn’t explain that I have a profoundly severe case of M.E. So, it feels a little bit like it might if one was gay and not ‘out’. Everybody’s assuming how I identify and offering solutions based on that mindset.
So, in honour of inclusivity and Severe M.E Understanding and Remembrance Day, I’m coming out, but just a little to save on your patience:
I haven’t left my home, bedroom or bed, since 1993, apart from an imposed house move, by ambulance and stretcher in 2003.
For 25 years I’ve been 100% bedbound and “bodybound” – barely able to move in the bed and only occupying two positions, either lying on my left side, or propped by pillows, reclining for just long enough to eat.
At a very early point it was threatened that I would be removed from the practice list if I requested a home visit.
The GPs refused to visit for 23 years “unless there was a medical need” . That is, they would come out to assess e.g a chest infection but there would be no management of my condition of severe and profound M.E.
I’ve recently actually been visited by a new GP, after the old ones retired (but only because of another acute injury) who has offered to visit me once a year – Big Deal!
I only gained access to the Internet in the spring of 2016 and find that most of the M.E groups on Facebook are solutions-orientated.
After the cumulative effects of 38 years I’m physically fragile, and exhausted beyond belief, and cannot even tolerate someone else helping. No interventions are possible.
I’m intolerant to all medication and frequently experience an inverse or idiosyncratic reaction. I’m barely able to move and can’t soak in the tub, visit a chiropractor or even apply creams designed to relieve the pain and inflammation.
Due to the severity and chronicity of my M.E I wasn’t/am not able to take any action whatsoever to alleviate or treat the extreme and acute pain caused by the injury.
The reason that I’m writing this is that, I’m sincerely glad for those who are able to follow protocols and improve their quality of life, but we need to be aware that this is not the case for everyone in these groups.
There are those of us still out here for whom nothing has changed, because nothing is able to be changed.
We are invisible, ignored and sidelined and for the sake of inclusivity I’m hoping to make people living with very Severe M.E a little less invisible, once again, today.